Colin crawled into my lap this evening. He had a rough day at school today. During Library, he got “in trouble” and had his name moved from the Green to the Yellow light on the traffic sign. That’s a bad thing. When you get to Red, you are in deep doo-doo. It took him nearly an hour to let me in on what he had done to result in his traffic light changing. Library days are wonderful and he didn’t come home with a book…what gives?

HIM: “I was sword fighting with my book-finder. Me and Chorea were swordfighting and got in trouble and we got our books taken from us and we had our names moved to yellow and, and…..and I DON’T WANT TO TELL YOU!!!!!”

ME: “Thank you for telling me what happened. I’m sorry you didn’t get a library book, but I’ll bet you won’t sword fight with rulers again.”

HIM: “NOOOOO!!!! I’ll NEVER EVER do it again.”

Good.

Someone asked me this morning if I was ready to get back into the swing of things. I bit my tongue and smiled rather than telling them that my swing had swung far away many weeks ago.

I’m looking for it.

Three months ago I was working full time, swimming with my kids, admiring my husband as a stay-at-home caregiver.

Two months ago, hubby was starting a job and I was ready to be home to care for everyone.

Six weeks ago I was at the beach.

One month ago, we were asking Hospice to come care for Charlie as he prepared himself to take his final journey.

Three weeks ago I was managing medicines, phone calls, dr. visits, meals, bedtime, baths for young and old.

Two weeks ago, I was beginning to sit vigil.

One week ago I was planning for a funeral and sharing my home with extended family who rallied around to get through this.

Today, I said goodbye to the last of visiting family. I made calls to Social Security and insurance companies informing them of a death. I mowed the yard. I said goodbye to my husband as he left for a week away. I wiped tears, fed bellies, made beds, washed towels and felt very very lonely.

Listening to the Hospice doctor speaking to Fay and I today, I was reminded how serious the job of helping someone die really is. We had our first Hospice consult on Friday last week. Six days later, we’ve had 4 scheduled RN visits and one highly unscheduled visit when Charlie fell. We’ve had two social work visits. Today, Dr. Playfoot came here and stayed until we were ready for him to leave. Nearly 90 minutes.

He cared, he talked, he asked, he questioned, he looked, he examined and observed. But most of all, he was a human treating a human. Not a clinician treating a symptom.

So often in the medical field, we want to fix the thing that bothers our patient by throwing medication or therapy or tests at them. For nearly 30 years, Charlie has been rescued and sustained by an ever-increasing number of medicines. New surgeries, fake heart valves and blood tests. He has a neurologist, cardiologist, urologist, endocrinologist, podiatrist, internist, gastroenterologist and a family doctor who shall remain nameless because he’s the most incompetent physician to walk the earth.

Now, he has a hospice team who will save him from blood tests, unnesecary pills, and stupid ideas of physical therapy. He has a team of people who care about all of us and are willing to help him live comfortably as long as he wants. They are also willing to help him die comfortably when he decides to give that a try.

They are the first people to ask Andy and I how WE are doing. The social worker stopped by unannounced with information on how the kids can deal with this.

We can’t fix this. Fay wants to try, but we can’t.

Today she found out that no one can fix it. Dr. Playfoot told her that he can’t fix each symptom…we’ve lost part of this fight to PD.

As a daughter-in-law of someone who never throws things away…I implore you to look beyond yourself and realize that someday, one of your children or one of your children’s spouses will spend hours and hours going through all that crap and then pitching it!

I am now surrounded by boxes of papers ready for the Shred-It people who will charge me by the pound to obliterate any traces of personal information contained therein. They charge by the pound. I have at least 90 pounds of papers.

The IRS and Medicare are tricky. You can claim expenses, itemize deductions, under certain circumstances. Most people don’t fit those circumstances. So…stop with the obsessive record keeping.

Don’t go to funerals, give a donation to the memorial fund and then write on the pretty little service program you received the amount of your “charitable donation” and the date you used it as a tax write off. That’s just sick.

Don’t paperclip or rubber band all these things together. I have to remove each and every one of those before the shredder can eat the paper inside.

Don’t keep everything in it’s original envelope with little notes on the outside referring me to the date, hour, minute and second that you spent the money or claimed the deduction. It just makes the whole process of going through your stuff even more aggravating.

If you had spent half the time, money and energy on playing with your children and grandchildren or having fun with your wife that you did keeping, sorting, filing, documenting and storing all these papers….I can’t imagine how different it would be.

Four and a half years ago, Andy and I made a decision that has greatly affected our lives in ways we weren’t prepared for. We bought a property with an in-law quarters so that his parents could move in. At the time, the decision was made because his mother was having some mobility issues. That has resolved. But, in the meantime, his dad’s Parkinson’s Disease has taken hold and crippled him and is beginning to suffocate those around him.

Over a month ago, Andy’s dad was admitted to the hospital with severe dehydration. He had been sick for weeks and neither he nor his wife were taking care of it. They are fiercely independent and wouldn’t seek medical care for what they thought was a minor illness. He became sicker while hospitalized and then transferred to a skilled care facility for rehabilitation. The goal of rehab is to get him home again.

During his absence, we have begun to learn more and more about Andy’s parents. The facade they have constructed during 60 years of marriage is crumbling and the picture isn’t so pretty anymore. So much energy has been spent on doing the “right” things in public and being the “right” person and not enough energy spent on developing relationships or being at all real. There seems to be no one around them except us. Even their church has no idea what their real struggles are and there are no friends in the congregation at all. The pastor shows up on occasion to visit at the nursing home, but that’s it.

Today the therapist from the nursing home is coming here to see the apartment. Andy’s dad will be here too to try and show her how well he can care for himself at home. Hopefully it involves a walker and a wheelchair. It’s his trial run. I’m sure he’ll put on a great show; I’m not sure she’ll get the real picture.

We’re frustrated and irritated and sometimes angry. We’re sad and confused and often stressed out. We are at a loss for what to do; what would truly be the best thing to do. We know they need more physical on-site care. We also know they won’t allow that yet from anyone outside. So, that leaves us to either drop everything and be here or just go about our lives and watch them struggle with their day because they’re too proud or independent to ask for help. Much of his physical care falls on Andy’s mom. She can’t handle it. She doesn’t want to handle it and she’s made that very clear to her kids but she won’t tell her husband that. So, instead, she does whatever he wants at her own risk.

I struggle with being home for them more. It wouldn’t hurt my kids either if I was here more than at work. But, we’d be financially incapable of maintaining our property or anything else. So, that’s not a choice. Andy has even considered quitting his job to be here; that’s not a viable option either.

So…we’ll see how today’s trial goes. Then we’ll know more about what will happen in the near future. The only thing for sure is that it just won’t be easy. For anyone.

Email Subscription

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 7 other followers

Other Pages To Read

Why “Divine Graffiti?”

I wait patiently each day to see what Divine Graffiti will appear on the walls of my life. Life has a way of imparting wisdom to us through the experiences of each day as well as smacking us over the head with insight and reminders that I must remain present. Through my writing, I learn more about myself and about what is in store for me and mine.

Quote of the Month

You'll have to stand on the side of a mountain for a long time before a roast duck flies in---ancient Cantonese Proverb

DISCLAIMER

I am not responsible for everything I write here. It is simply my mind running away with me. I tend to speak before I think and write before my fingers have had a chance to ask permission!